Autism Is Not Just An American Thing

You’ve heard of autism, right? Thanks to ubiquitous blue puzzle pieces, TV shows and movies, and daily headlines in English-language news media, a lot of people in the United States have some awareness about autism, even if it’s a caricatured version presented to gain donations, viewers, or readers. In fact, in the US, many autistic people and their allies have sought to move on from awareness and talk more about acceptance.

In non-USian parts of the world, though, autism doesn’t necessarily get this level of attention, much less acceptance, despite the fact that autistic people are everywhere. One of the largest epidemiological studies of autism identified it in 2.64%% of South Korean schoolchildren, and anecdotal assertions to the contrary, autism does exist in countries like Cambodia. Autistic people also live in Yemen, where a lack of awareness can seriously affect outcomes. As Yemeni mother Fam Um Ahmed said in an interview with Sadeq Al-Wesabi, writing for the Yemen Times:

Although I’m educated, I had no idea about autism, and what I’d heard about it was that it’s a horrible and destroying thing. I didn’t realize at that time that my child was suffering from autism until the doctor told me,” she said.

“Autism is not an easy thing for parents. It’s a shocking thing,” she added.

Um Ahmed advises mothers to take action if they notice their child is very introverted and doesn’t seem to be able to keep up with others in their age group.

“They shouldn’t listen to their friends or neighbors who advise them not to take their children to the autism center at an early age,” she said, adding that there is a plethora of information on the Internet that can guide parents through the often tricky situation of determining if their child needs special care.

Currently, Um Ahmed is satisfied with her child’s progress.

What awareness Um Ahmed did have about autism was as something “horrible and destroying,” a widely disseminated caricature that overshadowed any possibility she would recognize her own child’s symptoms of the condition. Part of autism awareness anywhere should include a more nuanced discussion of what autism looks like so that parents and clinicians can recognize early signs instead of looking only for the manifestations of a monster.

This recognition of early signs is important to effective therapy. According to the article, Yemen lacks specialists who know how to implement the latest in autism interventions. In addition, the article notes, the media coverage that can lead to topical burnout in the US is lacking in Yemen, contributing to the absence of awareness. That, in turn, has real consequences for autistic people, says Seham Al-Sadmi, director of the only facility in Yemen for young autistic people:

Due to this lapse in expertise and awareness of this mental condition, parents are often in the dark and without guidance in diagnosing and caring for their autistic child. They can also be in a state of denial regarding their child’s circumstances, according to Al-Sadmi.

“The majority of the cases that are brought to the center are in very developed stages. Some parents consider children with autism mad,” she said. “Most of the parents bring their children at an age of 12 or 13. It’s very difficult at these ages to provide them with rehabilitation programs and training.”

Studies suggest that interventions at a very early age can smooth some of the aspects of autism that interfere with a person’s quality of life. But the lack of awareness in Yemen coupled with what Al-Sadmi calls “government apathy” means limited access to such interventions for autistic children in Yemen. The single facility in the country currently exists thanks to a mix of government and international funding, but that doesn’t help families who live too far away and can’t afford to travel to the center for help.

Yemen doesn’t seem to have a large, well-funded national organization to litter the country with blue puzzle pieces and ask for your donation at a Toys ‘R’ Us checkout. Its media don’t appear to carry the obsession that the US media have with autism–in fact, a search on “autism” at the Yemen Times turned up three articles. A search at NBC.com? That gets you 721 hits. In the US, that level of coverage starts to become background noise. In Yemen, awareness–or a lack of it–really does matter.

It’s not a huge shock that we in the United States tend to be US-centric when we talk about anything–politics, religion, global climate change, autism. But as we spend our time and energy here arguing the finer points of autism causation, writing alarmist stories about every scientific study that mentions autism–whether it studied it or not–, and engaging in internecine battles in the autism community, autistic people walk around all parts of the globe, needing resources and support and useful interventions as much–or even more–than autistics in the United States. Perhaps it’s time more of us became aware of that.

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Andrew, I agree. And a first step is to give people some clarity about autism, rather than consistently casting it in terms of a tragedy with no potential positive outcomes. I think that kind of characterization can lead people to give up from the get-go or to view autistic people as lost causes.

“In fact, in the US, many autistic people and their allies have sought to move on from awareness and talk more about acceptance.” We really need to be aware of what autism is going to cost us and to accept the fact that the bill will be huge. Officials tell us that 80 percent of Americans with autism are under the age of 18. Maybe the next big topic that we all need to be aware of is how much autism is going to cost this county as all these disabled kids age into adulthood and become dependent on the taxpayers. Estimates range between $3 million and $7 million for lifetime care for EACH INDIVIDUAL WITH AUTISM. Maybe when we’re all paying for this disaster we’ll get serious about finding out what’s causing it. Anne Dachel, Media editor: Age of Autism

Officials don’t tell us that 80% of autistics are under 18. Officilas tell us that 80% of those diagnosed may be under 18. That’s very different.

There is a huge population of undiagnosed and underserved adults. This includes individuals with intellectual disability. Denying that reality does two things: it hinders our ability as a society to support those adults and it makes it difficult to prepare to support the autistic children of today when they become adults.

We can’t change the mistakes of the past. Some will continue to make those mistakes. Denying the existence of autistic adults is a mistake.

There are a much smaller number and percentage of adults with autism than kids. The first wave of this generation with high autism rate is now reaching adulthood, and families are finding a dearth of resources for adults with autism. There’s no hidden hoard of autistic adults out there. And I’m not talking about nerds – we’ve always had plenty of nerds, me for example.

Every week it seems there’s a new study out that suggests or hints at something about autism. Scientists treat autism like a curiosity they can perpetually guess at. Nothing is ever conclusive and autism remains a mystery, hence the puzzle piece emblem. We’ve had an endless parade of studies linking autism to older dads, older moms, bad genetics, obese mothers, high tech parents, and living too close to a freeway. Struggling parents with autistic children have lost hope in these experts. Millions of dollars have gone into autism research and mainstream medicine still knows nothing for sure—except that the ever-expanding vaccine schedule isn’t a factor in exponential increase in the number of affected children—and they have lots of drug industry funded studies to prove it. Anne Dachel, Media editor: Age of Autism

The irony being that I am a pretty large skeptic of the idea that we fully understand all of the possible effects of the vaccine program, but the way you are going about things is dumb, dumb, dumb. You are doing your best to convince the Internet-At-Large that you should be ignored.

pD, thanks for pointing out that the tactic you reference is probably not terribly effectual and distracts from what could be at least a rational discussion. I think you and I rarely agree, but we also seem to be able to have exchanges (involving original material, no less) without resorting to certain gambits, and I appreciate that.